Friday, December 26, 2008

It started out ok. Rob and I exchanged presents, and later kisses. We both liked what we gave each other. Motria and Lenny watched as the cats played with their new toys too.

One disappointment: my ring from Brighton broke. Oh well, I'd keep it as a momento anyway.

The ride on Wheel Trans was nice. The driver was new, respectful, and cheerful. Wow!

When I got to Mom's place, we sat and ate date squares and shortbread cookies, and chatted. It was lovely.

Things started to fall apart from there...

It all started when Mom asked me if Rob liked one of the presents I bought for him: The E-Cigarette. And, I explained that yes, Rob was happy with it and was dying to try it out, but the plan had always been that I'd get him a few Accupuncture treatments first (like I had done for him before we went to England) to make the cravings go away. After that, he could use the E-Cigarette to help him stay off cigarettes for good because, shaped like actual cigarettes, they would help with the phychological withdrawl of having nothing in his hand all the time.

Well, then, my brother piped up and he said he didn't understand why people had to use tools to quit smoking. He had gone cold-turkey when he quit, why couldn't everyone do the same? I said that I had read somewhere that addiction to cigarettes was worse than Heroin addiction. My big brother ignored that comment and suggested that perhaps Rob (and other people I won't mention) were "inactive" ("staying home, doing nothing") and this was the reason he/they couldn't quit smoking.

This really got me fired up! Rob helps me with my daily needs every day, without hesitation. And, when I had the 24 hour flu on Monday night, he stayed up with me. Inactive, my ass!

And then, I mentoned that I knew a lot of "active" people who had trouble quitting or were still having trouble quitting. And, Mom pointed out that Dad, a very active tennis player quit cigarettes in his 30s and started smoking a pipe right away and, until his dying day, never gave that addiction up.

There's more, but I'm tired. It's 4am.

Just the highlights:

Mom said that I shouldn't pay any attention to my brother. Yeah, right, don't tell him not to start the whole thing in the first place! Thanks, Mom.

To add insult to injury, my mom loudly suggested that perhaps I was in "the change". She didn't understand why I glared at her, but I've been hearing this lame suggestion from her since I was 38!

Oh yeah, and on the way home, the Wheel Trans bus broke down and I had to wait for another one.

Monday, November 17, 2008

Well, I've hired 2 new employees who are fantastic! Amy and Laura, welcome! I promise to be a good and fair boss.

For Halloween, I dressed up as a Canadian tourist in England. I wore the goofy looking tourist hat that Rob bought me for my 50th birthday while we were in London. And, I wore my "Good Girls go to Heaven and Bad Girls go London" t-shirt and the gold mini skirt that Sarah bought me. Oh yeah, and I had the necklace that I got from the Brighton boardwalk on and the large blue pendant from the London Eye. Perhaps I didn't look scary, but, at least I was original

Work-wise, I've been, as usual, busy, busy, busy! St. Lawrence Market has been much more busy, I've received several commissions for paintings. I'm having an art show/Xmas party on Nov 28th, and I'm trying to get ready for my Pawsway gig on the weekend of Dec 6th-7th.As if my life wasn't hectic enough, I agreed to be a co-presenter today and talk to a group of medical people from the Ontario Hospital Association.

The topic was on how to improve communication between medical professionals and patients with communication disabilities (e.g., CP, MS, ALS, and people who have had a stroke or brain injury.)

It was explained to the medical professionals that using an alternative method of communication (e.g., low-tech alphabet/word board or high-tech computerized voice-output devices) were vastly different, and the way in which people used these devices were also vastly different. Thinking up simple mode of communication for all patients with communication disabilities would simply be impossible!

My colleague was overly enthusiastic and barely allowed me to say anything at all! However, I did get a couple of important things out there: 1) whether a patient uses a high-tech or device, they usually also use eye gaze, body language, or facial expression. And, 2) It is very important that you, first, discover how that particular person communicates and what their preferences are - like where to put their device so that they can access it easily.

My colleague told the medical professionals a horror story about a guy she knows. He had CP and, like me, communicated with a low-tech alphabet/word board. When he went into the hospital, they immediately took his board away and put in a drawer for "safe keeping". Worse still, they gave him food every mealtime but never inquired if he needed any assistance to eat. He almost died from starvation!

When I returned to the table to finish my lunch after the presentation, I told my own horror story. It was about my friend Cookie who went into the hospital for a simple procedure and the hospital tried to persuade her to get a G-tube, saying it was because they didn't have the time to help her eat. When she refused, they tried to "go over her head" and asked her attendant for permission to insert a G-tube. Fortunately, Cookie had a decent attendant who supported Cookie's refusal.

I then told the people at my table about a good experience I had the last time I was at a hospital to get a piece of meat dislodged from my throat. It was at Mount Sinai Hospital, and they had no trouble whatsoever catching onto the way I communicated. They signed me in, got me a cubicle in Emergency, and told me I could stay in my wheelchair for as long as possible if it was more comfortable for me. And, when it came to the time of the procedure, they understood it was difficult for me to sign the consent form while I was lying down, so they let me do a verbal contract.

The people at our table were really nice and seemed to respect what Lenny and I had to say. I told them that a lot of times it just takes common sense to communicate with people with communication disabilities, and Lenny said that it also took human decency and a willingness not to be anti-ableiistic.

Saturday, October 25, 2008

I'm not sure where to start. So many times during the past week I was going to start writing about something of interest, but then something else happened and then I'd think, hey, that sounds interesting too, maybe I'll write about that instead.

Where do I begin? I've begun this blog a thousand times in my head. Both good and bad things have happened to me this week. I won't say which weighs on my mind more, good or bad - you can guess for yourself!

Well, first, I did a portrait of my good friend Nora for her birthday. Happy birthday, Nora! Yay, Nora! Yay, art! I love it when my artwork pleases someone and makes a difference in their lives.

On Wednesday morning, Lenny and I went to speak to a class at the YMCA Academy. The kids were all very inquisitive and great!

I spoke about what it's like to have a disability in Ontario, Canada. When you're on ODSP, I explained, you're trapped forever in poverty with no hope of escape. You only receive a small monthly amount, and then, if you get anything extra from other sources, which is rare, it's counted against you the following month. So, you can never get ahead, let alone choose a better place to live.

I also told the class how Direct Funding works, how only 700 people with disabilities in Ontario can receive this specialized funding. Despite the fact that most 24 hour attendant services are shown to be abusive (this is why I got out of them!) and that thousands of people are on the waiting list for Direct Funding so that they can choose and hire their own personal assistants, the Ministry of Health has put a cap securely on this type of funding. Seven hundred people in Ontario, and that's all. Unless someone dies or goes off the program, no one else can get Direct Funding.

Like I said, the kids were very inquisitive, and they asked what they could to do to help me, and people like me. I suggested that they write to the Ministry of Health and to their Member of Parliament outlining the aforementioned problems. I also asked them to spread this information amongst their families and peers. Ignorance, I said to them, is our biggest problen.

I felt good about talking to the class. It was a small but positive step in the quest for better services for people with disabilities.

I also felt good when I received an email this past week for an order of my note cards. Hell, I felt awesome! The guy said that he was from Australia and that he wanted to buy $2,000 worth of cards from me. I didn't think that this sounded too suspicious - I mean, people are supposed to find my website and buy my artwork, aren't they? I thought that maybe he owned several stores in Australia, which could explain the large order.

I was so good, paying close attention to detail so that my customer would be happy and satisfied. I counted my cards to see if I had enough for the order, I went to the postoffice to find out exactly how much it would cost to ship the cards, I sent him a detailed invoice and directed him to my Paypal account.

The beginning of financial independence was within my sights, and I was so incredibly happy! And then, it all came down like a house of cards. It was a scam - a nasty, mean-spirited scam! I knew it as soon as he asked me to pay for the shipping. And then, Rob looked up scams like this, and there was this guy's name, big as life and twice as ugly!

What's wrong with people?????????? Here I am trying to make the world a better place, and there's jerks like this guy trying to scam people out of their hard earned money! Jeez!

As Roy from The IT Crowd would say, "People: what a bunch of bastards!"

Sunday, October 12, 2008

So, tonight was supposed to be Aaron's big party before he has his operation to remove the tumours from his bladder. Yes, well, it didn't go exactly as planned. I'm upset about it, but not too upset because I'm a bit drunk and a bit high on pot chocolate, and this numbs the pain and the fury.

On Wednesday, with Lenny's assistance, I called the administrator of my building and asked if I could rent the common room for Sunday (today) for Aaron's party. She said sure, no problem, she'd tentatively book the room for me. I'd have to pay $25.00 for the rent on the room, she said, and $50.00 for insurance (just in case I left the room in a mess), and I reluctantly said yes. She then said that I needed to fill out a form too. So, on Thursday, I went to the administration office with my cheques and asked for the form I was supposed to fill out. All I got were blank stares. The head person was out to lunch, and they didn't think there was any form for rental of the common room. I knew better than they, and so, came back on Friday and filled out the form.

I thought everything was set. I bought chips, dip, candy and pop for the party. Many, many invitations were sent out. I was prepared, I was on the ball!

Unfortunately, the management of this building wasn't.

At 6:30pm we went to look for the superintendant to open the room. I had booked the room for 7pm, but we needed to set up. The superintendant is new, so I didn't have her phone number, but somebody told me which apartment she lives in. We went to her apartment and knocked on the door, but there was no response.

Concerned about our guests arriving and not knowing where to go, we went back down to the lobby, let people in and explained the situation. We all sat in the lobby and Lenny and I kept checking the locked door. Then after 7pm, we went back upstairs to try again to find the super. Unfortunately we realized our mistake, we had been knocking on the wrong door. We saw a note posted to a different apartment door, saying that the super was off for the day. However, the note directed us to the apartment of the assistant superintendant. We phoned the "emergency contact" numbers listed for the assistant super, but there was no response at either number, nor was there any response at his door. We left multiple messages (I wonder what would happen if there was a real emergency) but he never answered or returned our calls.

Frustrated beyond belief, we took the party to my apartment, but nobody could stand the heat which we have no ability to control. Once they shut off the air conditioning, this building heats up like an oven. We went to a nearby bar, leaving signs to direct any party guests that way and called the building administration "ratfaces".

At the bar, we had a good time and I think that Aaron enjoyed himself. Still, I feel angry about the events of the evening. I want my money back and justice done!

Tuesday, October 7, 2008

So, Rob got his new sofa and I got a whole new apartment... sort of. It took 4 days of rearranging of furniture, cleaning and mopping, and throwing out junk, but now it looks spectacular! It looks the neatest that it's probably ever been. I'm so happy!

That was a good change in my life. There were a couple of not-so-good changes that happened at the St Lawrence Market this past weekend. Minor things, sure, but they still annoyed me just the same.

First of all, they had removed all of the tables and chairs which used to be across from my cart. People used to sit and eat there and chat with me. It was nice talking with people. Sometimes they became regulars, and because of this, this even produced sales for the surrounding vendors and me. Now, the New Zealand vendors have expanded their domain and put 4 large glass cases showcasing their jewellery, replacing the tables and chairs. Disappointing, sure, but not a huge deal....

And then, there's a new vendor who sits on my left side. She says she knows me and I vaguely recollect chatting with her maybe one year ago. Well anyway, I sure won't forget her now. She was big, loud and pushy. She came in way after the vendors to my right and I had set up and started telling us we had to move over because she did not have enough space. Before we had time to digest this request, she promply grabbed my cart and moved it herself. Two things will automatically piss me off, one, taking my food without asking, and two, touching my stuff without asking. I am generous and reasonable, except for when this happens.

Well anyway, this topic is called "Changes, Both Good and Bad," so I have more good changes too. I've heard through the grapevine that Tobias House is finally reprimanding and punishing its employees for their inappropriate behavior. Its employees are being suspended and its clients are finally being listened to. Although I would never consider going back to Tobias House for its services (or to any other attendant service for that matter) because I love, love, love having Direct Funding and being able to choose who works for me, I am overjoyed with this new development and hopefully other attendant services will follow suit.

Another positive development has been the anti-poverty group formed recently by ARCH and Studies in Disabilities. I've been to 3 meetings so far that they've hosted, and they seem to have a lot of ideas and enthusiasm. Admittedly, I was rather disappointed that more people with disabilities didn't come to the latter 2 meetings and that the goal this group has set to "End Poverty" is 2010. In my humble opinion, 2010 is way too far in the future! ODSP and Welfare need to be raised to a living wage now not in 2 years! People need more money to pay their rent and buy nutritious food.

Tuesday, September 30, 2008

Ok, so I'm a week late - but PawsWay (the Art of the Pet Event) was fantastic!

The other artists were both friendly and suppor- tive. And, the people who worked at PawsWay were amiable and wonderfuly helpful. If Curtis or Motria left for a personal break or to get me some food, the workers would immediately step in and help me sell my work. Amazing!

There were dogs all over the place. Both the artists and customers were allowed to bring any pets they had. PawsWay, you see, is also a teaching centre where people can learn how to take care of their furry loved ones.

I did very well over that weekend. Lots of sales, much praise for my artwork, a few possible commissions. All in all, a very possitive experience!

Plus, the workers said that PawsWay would have this event every 4 months and that they would promote both it and all of the artists. They asked me if I'd like to come back, and I replied with a resounding yes!

Saturday, September 20, 2008

Do you ever have one of those days... er, weeks... er, months? Times when you feel like you're on an emotional rollercoaster?

September has been a shitty month. There's no polite way to say it. September has been a terribly shitty month!

Upon my return from England, I heard about my dear friend Aaron having cancer, which is so unfair! Why must such a terrible thing happen to such a sweet, unassuming guy?

I had two of my employees quit on me, and others who wanted their shifts switched around. (I understand that people's lives change, and dealing with this type of thing is just part of having Direct Funding and being able to choose who works for me - but, god, sometimes I feel like in scheduling hell!)

Rob's easy chair is falling apart. The front left wheel on my commode still hasn't been repaired yet. In fact, there hasn't been any OT person visiting yet to do an assessment of the problem. It's kind of a race now to see if Rob will get a new easy chair before I get my new commode. My bet is firmly on Rob.

My mother very, very kindly has offered to buy us a new easy chair. My mother is a wonderful woman!

If I could afford it, I'd buy Rob a chair myself. Hell, if I could afford it, I'd simply buy myself a new commode!

But I can't. Sales at the St. Lawrence Market has been absolutely dismal. Look up "starving artist" in the encyclopedia and you will, most certainly, see a picture of me.

Next weekend, I'm going to be a vendor at Queens Quay Pet Show, which I'm very hopeful about! It replaces my hope about the consulting job at Bloorview Kids Rehab. I recently heard that this project doesn't start until Spring '09!

On Thursday Lenny and I went to a workshop called "A Call to Action to End Poverty for People with Disabilities in Ontario: Imagine an Ontario where no one ever went hungry and where everyone was treated with dignity and respect!" It was hosted by ARCH Disability Law Centre and Disability Studies in Toronto.

The email they sent me as an invitation to the workshop intrigued me: "The Ontario Government has announced that it will develop a poverty reduction strategy by the end of 2008. Public consultations are being held across Ontario. We want to make sure that people with disabilities who are living in poverty get consulted and are actively involved in efforts to end poverty in Ontario."

Was the government finally going to do something about poverty, especially poverty in relation to people with disabilities? I was reservedly hopeful.

There were about 25 there, and we were all saying how insane it was for the government to expect people on Welfare to rent an apartment for $350.0o. People with disabilities, like me, who receive the meagre ODSP monthly pension were all saying the same things: 1) we should get an increase in funds so that we're not living below the poverty line, 2) ODSP should not penalize people for receiving monetary funds from friends and family (such a practise traps us in poverty forever), and 3) we should not have our meagre funds scrutinized every year by ODSP; it's a truly humiliating experience! And, if we send in our taxes every year, why must ODSP scrutinize the little money we have?

We were asked what would we do if we didn't live in poverty. Right away, I said I'd get out of subsidized housing and get a bigger, nicer place. (I hate the fact that I have limited choice of where I can live!) Other people said that more money would mean being able to buy healthy food for their families, or to take a yearly vacation, or pay for childcare. Nobody suggested anything outrageous like caviar or diamonnd rings. We all just wanted to have a better life and live with some dignity.

The workshop made me feel good - empowered! And yet, I doubted whether anything would happen... within the near future anyway. And, with the election coming up, I'm even more doubtful. When elections come up, people with disabilities (and other minorities) are forgotten.

And yet, I have to have hope. I have to keep fighting, fighting to have my voice heard and change things for the better.

Friday, September 12, 2008

What a day! We had water pouring down from the apartment above us into our toilet. (We've been complaining about this happening for years!) That wasjust the beginning.

Rob's easy-chair broke. It has a HUGE hole in it!

I almost got run over by a car. The driver wasn't looking where he was going when he suddenly accelerated into the intersection, missing me only by a foot. The woman who sat next to the driver gave him a hefty smack, which made me smile.

And, sadly, I heard that my dear friend Aaron, who only recently found out he has cancer, just found out that he has more tumors in his bladder. Aaron's the sweetest, dearest guy - Where's the justice in that?! I keep thinking about him, worrying about him, hoping that he'll be all right.

I had one more trouble today, although it sounds pretty petty in comparison with the last thing I said ....

The wheel on my commode/shower chair is very dangerously close to coming off. As you can imagine, this chair is very important to my sanitary needs, so I was kind of in panic mode. I had Motria call HME (Home Medical Equipment) first to ask if they could either fix the wheel or give me a whole new chair.

Unfortunately, they told me that I should call ODSP first to get authorization from them before anything work could be done. So, Motria and I called ODSP, and Motria spoke for me. The woman at the ODSP office was impossible - and ignorant! She kept asking if she could speak to me, and Motria kept trying to explain that I was non-speaking, it was part of my disability. The woman still didn't get it and actually asked Motria, in a low, whispering voice, "Is she deaf and dumb?" Deaf and dumb? How offensive! And even more so when that woman is supposed to be working for people with disabilities.

I have more to say - a lot more - on the subject of ODSP and all the complications that arise when you try to get something important to you fixed or replaced. Unfortunately, I have to go to bed. I have to get up at 5:30 am to go to the St. Lawrence Market.

Tuesday, September 9, 2008

I'm back, folks! Back in good ol' Toronto, and ready to take on the world again.

Admittedly, I was incredibly depressed when I returned home. I had felt connected to England (and I still do!) and yearned to return there. Why do I feel this way? Because of my heritage, I've always felt more British than Canadian. And, because London was more accessible than Toronto, and their citizens seemed more respectful and knowledgeable in regards to disability issues, I inwardly groaned at the prospect of coming back here and fighting the good fight again for change. Don't get me wrong. I love a good fight, especially when I know it's for a good cause, but god damn it, sometimes it feels like I'm banging my head against a wall. Sometimes I feel like I'm pushing against an immoveable boulder.

Yes, at first I was depressed upon my return. Now, I feel like I'm back on track again. Painting, selling my artwork at the St. Lawrence Market, visiting with my mother, drinking Iced Caps. Usual stuff, sure, but exciting things are happening, too! Next week I'm going to a workshop for people with disabilities on how to end poverty. (Many people with disabilities who receive the ODSP government pension live below the poverty line.) I've been asked to act as a consultant for a project that Bloorview Kids Rehab is doing. I can't talk about specifics, but it involves children who use AAC. And, there's a slight chance that I might go to Berlin next year through a disabled activist exchange program.

Oh yes, and all week I've been working hard on updating my Cafepress store. Now, not only can you buy prints and cards with my artwork on them, you can also get notebooks, keepsake boxes, clocks, cushions, teddybears, ceramic coffee mugs etc. If you're interested, check it out! http://www.cafepress.com/adnaa

Sunday, August 24, 2008

1. Having "Camp Gaydar" in our front yard.2. Eating my toast with Utterly Butterly on it.3. Hearing people voice their opinions passionately at Speakers' Corner at High Park.4. Absorbing the culture, beauty and history of the country by going on the boat tour of the Thames; visiting Hampton Court and the Tower of London; seeing the Royal Pavillion in Brighton.5. Going to Cambridge Pub and having ale and fish & chips. My dad may or may not have liked ale (I'm not sure), but he ate fish & chips every Saturday for 48 years while he was married to my mom. Eating fish & chips with vinegar and salt & pepper like he used to do made me happily nostalgic.6. Sitting in the park with people on old-fashioned wooden lawn chairs.7. Laughing with Sarah & Rob, Catherine & Leon, about the most ridiculous things.8. The fact that all of the galleries and museums are free, relying only on donations to keep them running. And that there are so many bookstores in the neighbourhood. Such a country that focusses upon knowledge and culture can't be all bad.9. Aero mint Bubbles.10. "Mind the Gap" knickers.

4. I'll sincerely miss the transportation system. The people who run the trains were so friendly, respectful and helpful. At every stop there was a person waiting for me with a ramp, and they told us that it was against the law for a person with a disability to not be accommodated.

All buses were accessible and free for both my attendant and I. And, the bus driver did not have to get out to pull out the ramp, he just pushed a button to release it.

And there is no Wheel Trans, you just hop in a cab because most of them were accessible. And the cab drivers were far more respectful than the drivers Wheel Trans hires.

Once I get back to Toronto I am going to lobby for more accessible transportation. There is no reason why we can't get the same kinds of accessibility--and respect!